Tuesday, May 24, 2016

I haven't been talking much lately. When most people ask me how things are, I say fine and change the subject. In truth, it is the old expression, "The deeper the pain the tighter the lips." Our son, Wesley, has autism. At only 20 months, the signs were too apparent to ignore. The reality that we now have TWO children with (vastly different) special needs is so enormously crushing that there are no words. And so I've said nothing.

The "stages of grief" as outlined by psychologists: Denial and Isolation, Anger, Bargaining, Depression and Acceptance, are not necessarily sequential. They ebb and flow on a daily (or hourly) basis. Well, except acceptance. Because, honestly, I think acceptance is pretty much bullshit. I don't think you ever fully accept a deep loss. Denial I am past, because I am a logical person and cannot discount what is right before me, but the desire for isolation is almost constant. I have to really push myself to interact with those around me so I don't alienate relationships I have worked so hard to build. Anger: constantly flaring up (another reason I am wary of being around others). How is this possible? How did my relatively healthy body create TWO children with obstacles. And, I should add to this: embarrassment. I am embarrassed that I could not create healthy children. I am embarrassed that I chose to have a third child and was so sure I wouldn't be given ANOTHER child with issues. I feel like we are being judged for selfish choices. And depression. So much depression. Depression I have tried to treat with medication and therapy. The therapist just kept saying to me, "Wow, I would be overwhelmed too, I don't know how you do it." So I stopped paying Captain Obvious. The medication mostly keeps me from just going over the edge.

The daily routine of providing what these two children need is brutal. Between the two kids, I now have therapists in my house 13 times a week. I have nurses in my house 16 hours a day. There are currently only 6 1/2 hours a day when my family is alone in our own house. It makes it so hard to connect as a family. My husband and I need to have most serious discussions, and yes, even arguments, by text so we aren't overheard. We are rarely in the same room at the same time, even at night, because he stays up until Anabelle's night nurse arrives at midnight, and I go to bed early because Wesley is up multiple times every night and early in the morning. Neither of these children can talk, and we are constantly having to guess what they need and what is bothering them. With Wes, this is accompanied by dozens of tantrums every day as he is frustrated when we do not understand or will not comply. I once read that a study showed that the parents of children with autism tested with the same levels of stress as a soldier in an active combat zone. We, as parents, are constantly under fire, dodging bullets and putting out flames.

But I want to get to the real point of this post. We also have a typical daughter who we are trying to give a beautiful childhood and raise to be a happy, well-adjusted adult. And, God, I feel like we are failing so badly. The worst pain in all of this is that I cannot be the parent I want to be to the only kid who can really understand what that means. She is the one getting short-changed. She is the one who spends time with Mom or Dad, but never both. She is the one who never gets to go on vacation, who is told "wait a minute" 60 times a day, who feels like she can't even have an outburst in her own home on a bad day without being embarrassed that a nurse or therapist will hear her. We had Anabelle to give her a sibling. Anabelle has brought many things to her life, but companionship is not one of them. So we took the leap and tried again, to give Elyse a typical sibling relationship, so that someone would understand what it meant to grow up with a sister like Anabelle, and so that, if it should come to it, the burden of Anabelle's care didn't fall solely on her. Instead, we just made things harder. We guaranteed that she will have a sibling, if not two, that she needs to feel responsible for. We also proved that something is not right in the genes she inherited. How can I encourage her to have a family of her own, knowing what it means when something goes wrong?? I'm sure some of you are reading this right now saying, "Look, she hates her kids, she wishes they weren't born." I cannot change your judgment, Unless you have a special needs child of your own, you cannot possibly understand what it means to love a child with everything you have, but hate what their condition has done to them and your family. And I'm not going to say any more about that.

When my oldest daughter was born, I had so many dreams about how her childhood would be. So many things I wanted to share with her. So many places I wanted to take her. So many experiences I wanted to give her. But the reality is that I barely get any time with her. She gets home from school at 4:00. Wes has therapy until 5:30, then I make dinner, then baths and then I am putting Anabelle and Wes to bed. By the time Wes is asleep, it is time for Elyse to go to bed. I hate this. I miss my daughter. I am terrified that we will never be close because she has learned I am someone who is not available to her. And I am terrified that I am dedicating all of my time to Wes's therapies when it may end up he isn't capable of responding to them, and then I lost everything with Elyse for nothing.

Maybe all parents feel like failures. Maybe three typical kids have parents running in all directions, with no one fully getting the attention they intended. I don't know, I only know the life I am living, in which all my eggs are in one precious basket, and I am terrified the bottom is going to drop out from lack of support. Everything we are struggling through to give our special needs children the best life possible will mean nothing if we fail the typical one.

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Kate Linzey is the President at Linzey Appraisal & Estate Services (www.linzeyappraisals.com) and mommy to a typical 8-year-old and 1-year-old and a very special 3-year-old. You can learn more about Anabelle, her diagnoses and our family on the website of her charitable foundation, Anabelle's Wish: http://anabelleswish.org/, which provides aid to families with children with neurological disorders.